Day surgery for my ASD child – trauma, guilt and stinky doctors

My DS is zooming up and down the hallway singing the Star Wars theme tune joyfully. I ask him how he’s feeling and he says “great” and “holy mackerel I’ve got BB8” (a game character he’s very pleased with). I’m so happy that he’s back to his sunny funny ways because just 4 hours ago it was a different story entirely.

He had to go for day surgery to have a tooth removed (in the end they took 3, while they were there..) It was to be his second experience with a general anaesthetic, the first time had been very traumatic for him so I’d tried to organise things differently this time. We’d been promised a play therapist or specialist learning disability nurse to be an advocate for him and help him with coping strategies, to be first on the surgery list so it would be over sooner, a pre-med and skilled anaesthetist to insert cannula without him being aware.

None of the above happened. In actual fact, he was last on the list, received no special measures whatsoever, was given no time for pre-meds x 2 to take effect before being pinned down and gassed with mask held over his face until he went under kicking and screaming in terror “no” and “please don’t!”

I have to say that it goes against every bone in my body to allow that to happen to my boy. He trusts me to protect him and he was so damn frightened in that moment I just wanted to grab him and run.

There is nothing stoic about the way I feel today about his autism and his brain injury and the fact that it makes him so anxious, and demand avoidant (unwilling to comply with anything he’s not sure about.) Most children, my youngest included, will accept a cannula needle in their arm with but a few tears and squirms and can then be anaesthetised gently and kindly. Today I sobbed for his trauma, at his terrified pleas for them to stop and for all the future occasions when, as an adult with special needs, he will again have to be held down and sedated in order to receive any treatment.

When they led me from the room where he lay finally with no fight left in him, they told me to go and get a coffee, that they would come and find me. Coffee?! Are you crazy?! You have my boy in there, held down against his will and at your mercy. I’m going nowhere sister until you come and get me and return me to his bedside.

And as I knew he would, he awoke from the anaesthetic in an absolutely petrified and traumatised state that continued for hours. He cried hard and loud. Kicked, punched, and used the F word for the 1st time in his life. Repeatedly.

Screamed that he was going to kill the doctors. The stupid doctors, he would kill them all. When given a toy he threw it back hard in the nurse’s face. Piles of cloths for his bleeding mouth were ripped to shreds. I tried so desperately and in vain to comfort him, held him tightly, didn’t flinch at the punches. He repeatedly hit the porters and nursing staff too, as well as me and his support worker. This is not normal behaviour for him. He was just inconsolable.

All medical observations were refused. All day long he remained absolutely convinced that they were coming to get him with the blood pressure monitor, that he would be squeezed and hurt. The nurses could not (and did not want to) get anywhere near my boy.

Post surgery, we were eventually wheeled to a private room after being on display in a ward of eight beds for all to gape and stare at (and stare they flipping well did of course). Seven other families with children who had had their operations calmly (and hours before DS). All eyes upon my traumatised boy and no word or even look of comfort or empathy, just rude and gormless staring and sneering, watching ‘the show’. I wish to God that they could walk a mile in my son’s shoes, to know the terror that he was feeling right there and then and to understand and respect his need for acceptance, empathy, privacy.

And when it was over, it was over. He got it out of his system, the pre-med sedation finally kicked in and wore off and he had some pain relief. They gave him a trauma teddy bear and a Batman sticker and discharged us quicker than you can say Jack Robinson.

And here he is a few hours later, obsessing over his new Xbox game and tormenting his brother. And here I am, with another groove of guilty conscious that I will forever carry. I let them hold him down with a mask over his face. Again. (It happened the same way the first time he was anaesthetised when he was 5 years old.)

Is there a stoical way of letting this be ok?

It’s hard, it’s really hard to see your child so frightened. I don’t think it is ok really and I don’t know what the answer is. Sometimes in this world, we all have to do things we don’t want to, things that worry or disturb us but that will ultimately be in our best interests.

It’s what I try to tell him but he’s not interested. He’s sticking with “I won’t do it” and “those stinky doctors”. Well to be honest after today, I can’t help agreeing with him there!!

So sorry that you both had to go through this. I can only imagine how you both felt. My only experience of my guilt of betrayal in hospital was when my son was two. I was rather an ignorant mother, unlike you. The doctors and nurses would send me off out of the room for a length of time. However once I came back too soon. My poor son was having a stomach pump and when he saw me the look of ‘Why are you letting these people do this to me’ has never left my memory.

Sorry that your son and you had to go through that too. It’s only natural to want to protect them. I’m guessing that doesn’t go away when they reach adulthood either, whether there’s an additional need or not.